Long QT and ADD

Anyone have ADD with long QT? Need more info onit. Son has it Drs say no meds are safe to take.

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Suggest you get another opinion.
Do you mean that the ADD drugs are contraindicated with any cardiac drug? Why not safe? Did they explain?
Also, you might ask a pharmacist to explain possible reasons why docs said this.
You define ADD as attention deficit?

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Any medication that is stimulant,given for ADHD,has the potential to induce arrythmia.
In the forum of S.C.A.A.,you will find at least one parent complains that her son has problem with ADHD, as arrythmia and depression.
Given medication for ADHD,he had arrythmia.
Having arrythmia he had to take Beta-Blockare.
He became depressed(From the Beta Blocker),
His attention wention went down,so,outside the house he started to drink,highly caffeinated drinks and had arrythmia.Your son's doctor apparantly,wants to avoid this Yo Yo.

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Yes attention defeciet is what my son has, he is 23 and was seeing Drs for depression and given very mild drugs because of the Long QT, then while seeing one Dr found out he has sleep appenia, so one of the drugs he stopped because it caused drowsiness and had to be taken at bed time, was afraid he would not wake up between having Long QT and sleep apena and then taking meds that make you drowsy. He was very upset that he has sleep apena and won"t see Drs no more still on one med but nothing to help ADD, he is on beta blocker for Long QT has been for13 years since diganosed with it.Having Long QT has been a big part of his depression and anxiety that he has, could not play sports was playing soccer and wrestling at time he was found to have Long QT, we had a distant cousin at age 9 pass away from it and then we were alll tested 2of my 3 kids have it. So I feel for my son and wish he could be on meds that could possibly help him. ThaNKS FOR ANY HELP WITH THIS.

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My son has both. He has LQT1 and has had ADD since he was in the first grade. He takes a beta blocker and also ADD medication (he's been on Ritalin, Adderall and now is trying the new one, Vyvanse). He did experience depression when he initially started the beta blocker, but after discussing with the Dr, we changed blockers and got better results. As far as the ADD meds go, my son really can't function well without them. It's scary when you think how the meds work, and it's just what a Long QT person should avoid...BUT he's a freshman in HS and we have to try to get him through these challenging years. We are diligent about being sure he takes the beta blocker every day, which makes us feel somewhat protected. One thing we did do - that's not the norm - is allow him to continue to play ice hockey. I bought an AED and take it to every game/practice so we're as prepared as we can be in case of an event.
Do you know what type of LQT your son has? Maybe there is a different approach depending on the type.

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My son also has LQT and ADD. He is 18 and a Senior in HS. He had taken Concerta ( a form of ritilin) since he was 5. We pulled him off his ADD meds 2 years ago when he was diagnosed with LQT. Since then his grades have dropped so low that he is in danger of not graduating. Cardiologist reciently OK'd his Concerta. His LQT #'s are low. he also takes a Beta Blocker. I hope this helps!

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My dagughter was diagnosed with LQT syndrome when she was 20. She is now 22. Becasue of her anxiety due to the diagnosis of LQT she needed to see a psychiatrist who also dignosed her with ADHD. Yes most of the medications perscribed for ADD also increase the LQT. Go to www.qtdrugs.org to get an updated list of drugs that prolong the QT Interval. The drug list is broken into 4 lists. Drugs that in some cases are weakly associated with LQT to those that must be avoided. Bring the list to the doctors with you. Have him/her help you. Because of her age my daughter decided not take any medication except her propranaol for the LQT. Good luck.

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Hi ~ My nephew is "borderline" QT Syndrome ~ and he has ADD ~ this is wonderufl help.

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How do you find out what type of LQT they have? Was diagonised so long ago it was just LQT now yes they have type 1, 2 etc. Also it is so hard for me to watch my son day after day suffer with add and not be able to take anything to help. He was told to see Dr to talk with what to do but he won"t go back went once and DR said he felt he has sleep apenia so not wanting to he did have test in sleep lab over nite and does have it, made depression worse was very angry does not want to see Drs he says cause every time he does they find something else wrong with him. And I felt this Dr was best for him cause he himself has ADD, so want to help him but I also know he has to want it and with ADD he can"t focus on anything, right now he is laid off from work, just feel if he had meds he could focus on his life. He also has social anxiety and it is very hard for him to talk to anyone. He was also told of some things he could do for the sleep apena and he won"t try them, this all is so frustrating for me. I feel not treating the ADD is the biggest problem.

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Now there is genetic testing so you can define what type of LQT you have - and then based on that, you will know the recommended course of treatment. (For example, some forms of LQT respond best to beta blocker vs. implanted defib).
Based on our life with ADD - I would seriously pursue some help/meds. If my son didn't have meds, his ability to function would be seriously impaired. There are also a lot of great resources for ADD. Check out drhallowelll.com and additudemag.com. It's important to treat the ADD and the Long QT together - since most (if not all) ADD meds are contraindicated for Long QT. You need a specialist for each.

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Thanks is that the $5,000.00 test? I know of that, he has no insurance either. So I quess you can understand what its like living with someone who has add and yet cannot take meds for it. I am going to call cardiologist and see what they say again. One other thing is his beta blocker meds have not changed since he was little would think he needs more, he takes nadalol 1/2 pill in morning supposed to take 1/2 at nite but with the add thing always forgets. So he is only getting 10 mil. a day and this was like 13, 14 yrs ago when he started beta blocker.

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Since your son does not have insurance try researching the web for behavior modification strategies. Help him set an alarm for the evening hour that he should take his nadalol.

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Did you mention your son was depressed? Sometimes the beta blockers can cause depression, so if you think that's the case, talk to your cardiologist. There are lots of different ones and your son can try another one. My son was on Nadolol (as am I) - but it depressed him, so we made the switch and things improved.
Yes - the genetic testing is very expensive. But most expensive for the first test in your family. After that, each test is usually less than half. Since LQT is genetic, is there someone else in your extended family that can/will have the test done first?

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Thank you so much, never knew nadalol caused depression, will talk to cardiologist need to make an appt. anyway no refills left on nadalol, just wish he could take add meds, loses everything, gets very frustrated hate to see him go on like this. Thanks for your help.

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Hello, I can fully understand your concerns. Our 13 year old daughter had a heart defect and seizure activity that we had not been alerted to. Throughout the years, she had taken a variety of medications to assist with ability to focus... Had I known of the health condition with her heart, I would have been totally against it. Our little girl went to Heaven in her 13th year... She was not on any medication at that time, but I still can't help but wonder how these pieces fit in and may have contributed to her early death. She suffered sudden cardiac arrest and so our whole family needed to be tested for any predisposition to arrythmeias or structural defect. Fortunately, our other children and we tested fine. One of our sons, however, had been utilizing Concerta - which helped him enormously - and this had to be discontinued to be safe. His school marks plummeted and he had a horrible year. When all tests came back as okay for him to begin medicine, we opted to use Strattera (non-stimulant... but, works similarly.) Honestly, I totally 'get' where you are coming from because it was so hard for our son to struggle through school for that year without medication... That said, had there been ANY indication that he was predisposed to a heart condition, I could never have okayed him taking any type. I know this doesn't really help you, but all I can say is that I personally could not risk using a medicine knowing that there is a potential risk. That is coming from a mom who has lost their child... there is no greater pain.
May God Bless and keep your family safe.

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SO So sorry for your loss. My best friend lost her son age 13 12 years ago from heart problem was a nightmare so I really am sorry for you. I just wish all Drs. could be on same page, I have cousin has LQT and depression and taking meds that they say my son can"t take. Just made cardiologist appt. not till end of Arpril. I feel I do have the best Drs out there, my children started at Childrens Hospital of PHila. with Dr Vetter she is on SADDS foundation with Drs from all over the country now that they are older I had her reccommend who to see and this Dr who my son saw once was just named as Director of Cardiac Ablation and Arrhythmia, so I really trust what they say. My son also has another heart problem diagonased since he was 2. So you can see why he has depression. He is suppose to go to talk therapy had been a few times doesn"t want to go back since that Dr told him he might have sleep apena, which he was tested for and also has. He was so angry when he found out he had it says everytime he goes to Dr they tell him he has something else wrong with him, very hard for him to handle. Right now he is doing nothing for that which scares me. Does have appt. for Med Dr for one very mild med he is on for the depression and aniety he hasn"t been for long time needs to go to get refills of that med, hopefully when that day comes he will go cause he doesn"t want to really go. Well I rambled on long enough again thanks for help and so sorry for your loss. Take care

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Hello all,

I have been dealing with ADD in one child for several years and LQT2 in 4 other children more recently-- fortunately not both simultaneously. When I put one son on Nadolol it CAUSED ADD as well as depression. It seemed that the cure was worse than the disease, so we took him off. I have been on a journey of alternative options ever since and I've discovered some things that may help. They may not cure the problem, but they can certainly help, and definately won't hurt:

Beta Blockers are meant to block the adrenalin signal to the heart. There are other methods to regulate adrenalin more naturally. Regular meditation, regular moderate excercise (controversial--but I found 2 studies to back it up! Moderate is the key), controling blood sugar levels (Low blood sugar releases adrenalin and too much refined sugar also causes vit B deficiency which is an imporant nutrient "deliverer", see below), getting enough sleep, reducing stress, and learning to handle stress affectively. All of these things can decrease your body's adrenalin response in general and also during a sudden shock (which is the LQT2 trigger for arrythmia).

There are also things you can do to decrease the QT interval which is what puts you at risk for arrythmia in the first place. In LQT2, potassium supplementation is important because a deficient potassium channel in the heart is the cause of the problem. Magnesium is necessary for your body to use the potassium AND it is also important (and often defecient) in people with ADHD! This translates into "electrolyes" in general
(i.e. water, not "Gatoraid"--too much salt will dilute the pottasium in the blood), especially in the heat or with a fever. The DHA from Omega-3 has been shown to decrease the QT interval, but our bodies need vit B to break down the Omega-3 to get the DHA. Omega-3 and Vit B are ALSO things that have been shown to be deficient in ADD people and are effective in improving attention and mood!

Also it's important to know that the QT interval is the longest in the early morning hours and right after excercise (I believe this is true for all, but it may be specifically for LQT2). Also fever has been shown to increase the QT interval. That made sense to me because my son's one and only episode was AFTER P.E. and he had a slight fever (we didn't know he was sick that day).

We have also found some nutritional products that we have had some success with for our ADD issue (and mood issues as well): "Attend" (by Vaxa), Univera "Ageless", Reliv products (if they'll drink it!), and Isagenix products (tastes better, but more $).

There is one thing that we have had the best results with, though, that I wanted to share. It's called "Brain State Conditioning". It's a new technology along the lines of biofeedback, only it's called "Neurofeedback". It was amazing to see my child change over the period of a few weeks to be able to have productive, regular sleep patterns, more even moods, and especially be able to consentrate in school. She commented at one point that it was like
finally joining the world "in the middle of a sentence". Math became easy for her and she was completing all of her assignments and getting full credit--without my help or prodding! She had new confidence and a happier disposition. It was simply amazing! It is hard to know how many treatments are necessary to make permanant changes, though, and we were not able to continue because we ran out of money. If you are lucky, maybe your insurance would cover it on the grounds that the Long QT prevents other forms of medical intervention. The company is based out of AZ and it's called "Brain State Technologies". It wouldn't surpize me if it actually helped the LQT also because it trains your brain to make the parasympathetic nervous system (calming and thinking) dominant over the sympathetic nervous system (fight or flight). It was about $150 per 1/2 hour session for us, and we did about 24 sessions. They say some people only need 10 and others need 30 or more. But if it becomes permanant change it would be worth any sacrifice to me.

Good luck! Don't give up! I hope some of this is helpful to someone.

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Poor fellow, it is understandable that he is disgruntled with medicine... although, of course, helping, in his eyes, it appears that the more he attends appointments, the more bad news he receives. I think that is a pretty typical 'guy' response (no disrespect to any fellows!) I know, for instance, that my husband suffers from a chronic health condition and it makes him feel badly that he requires medicine to try and keep symptoms at bay. It's the feeling of powerlessness that detracts from their thinking and causes such stress. Women, on the other hand, are more prone to reach out to others and discuss negative feelings and in doing so, alleviate some of the stress. I don't know what to say, but the depression will need to be addressed for his sake as well as yours because the worry for a loved one is over-whelming. I will keep you close in thought and pray for answers. God Bless and thank you for your kind words towards our little girl. XO

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dmwillden
I might be stepping over a line here BUT... your information is very dangerous!! It is fine that you want to not treat your son's heart condition but your information is totally wrong and you shouldn't be sharing it with people who are new to the condition.
Most people come to places like this for moral support and a push in the right direction to find proper MEDICAL treatment.

LQTS is a potassium channel defect, not a potassium deficiency. It doesn't matter how much potassium you take the potassium channel still doesn't work. It is genetic and cannot be fixed. There is nothing that anyone can do to shorten the QT interval to stop arrhythmias.

Potassium in LQT2 has been shown to temporarily improve repolarization which sometimes shortens the QT interval but the repolarization abnormality is still there and the QT can dangerously lengthen in a literal heart beat, so shortening the QT interval is not an effective treatment. This has been studied and proven.

Beta blockers are the very BEST way doctors have of treating almost all types of LQTS including LQT2. LQT2 can be very unpredictable and needs to be treated with beta blockers.

I'm sure it is upsetting to have a child with ADD, I had a child with OCD and it ruled our world. There are dozens of different medications, natural remedies and diets out there for ADD... I would think it would be a lot safer for your son if you looked for alternate methods of treating his ADD and continued with his life-saving betablocker treatment for his heart condition. ADD won't kill him but LQTS could.

Sorry to sound so blunt and rude but your information could cause someone to believe that it is safe to NOT treat LQTS. And I want everyone who reads this topic to know both sides of the story before they choose to stop treatment and that we aren't discussing a benign condition - LQTS kills!

Please be careful.

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Stevie13wonder,

I'm so sorry for any harm I may have caused by my response. I didn't intend to lead other's to believe that these natural interventions were proven to be as effective as beta blockers or other medical intervension. I should have emphasised the need to consult a specialist in all of these important decisions. Is there another forum that might be more appropriate for discussing these things?

For example:
I am interested in seeing the study you cited which you said proved that shortening the QT interval was not effective treatment. I understand that it cannot, by itself, effectively CURE the disease, however,our electrophysiologist (UCLA) explained that it could at leaste decrease the chance of an extra heart beat fitting into the extended gap. His explanation seemed to be consistant with the ample research that
shows that the risk for arrythmia increases (statistically), the longer the QT interval is. I'm curious if the study you cited showed improvement in SOME subjects, but not "in general". I would really appreciate if you could head me in the right direction to learn more. Thank you.

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dmwillden
Your EP is speculating at best. The length of the QT interval is irrelevant as it can change from short to long in one heart beat in people with LQTS. There are numerous documented cases showing how quick the QT interval can prolong right before the onset of Torsades de Pointe. In fact extra heart beats in people with LQTS can cause dramatic prololongation in the beat right after the PVC which can then have R on T and initiate Torsades.
Link to one relevant article
http://www.ipej.org/0802/batchvarov.pdf
People with a normal resting QTc can have cardiac arrest, my son included.
As of today there is NO alternative treatment for Long QT Syndrome. I realize you want to find one but as far as I know there are no studies looking into it right now.
No need to apologize, I do understand, but again just want to warn of the possible danger of not LQTS.
Take care

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